Science Policy

Opening Up Scientific Enterprise to Public Participation

09.20.23 | 5 min read | Text by Grace Wickerson

This article was written as part of the Future of Open Science Policy project, a partnership between the Federation of American Scientists, the Center for Open Science, and the Wilson Center. This project aims to crowdsource innovative policy proposals that chart a course for the next decade of federal open science. To read the other articles in the series, and to submit a policy idea of your own, please visit the project page.

For decades, communities have had little access to scientific information despite paying for it with their tax dollars. The August 2022 Office of Science and Technology Policy (OSTP) memorandum thus catalyzed transformative change by requiring all federally funded research to be made publicly available by the end of 2025. Implementation of the memo has been supported by OSTP’s “Year of Open Science”, which is coordinating actions across the federal government to advance open access research. Access, though, is the first step to building a more responsive, equitable research ecosystem. A more recent memorandum from the Office of Management and Budget (OMB) and OSTP outlining research and development (R&D) policy priorities for fiscal year (FY) 2025 called on federal agencies to address long-standing inequities by broadening public participation in R&D. This is a critical demand signal for solutions that ensure that federally funded research delivers for the American people.

Public engagement researchers have long been documenting the importance of partnerships with key local stakeholders — such as local government and community-based organizations — in realizing the full breadth of participation with a given community. The lived experience of community members can be an invaluable asset to the scientific process, informing and even shaping research questions, data collection, and interpretation of results. Public participation can also benefit the scientific enterprise by realizing active translation and implementation of research findings, helping to return essential public benefits from the $170 billion invested in R&D each year.

The current reality is that many local governments and community-based organizations do not have the opportunities, incentives, or capacity to engage effectively in federally-funded scientific research. For example, Headwaters Economics found that a significant proportion of communities in the United States do not have the staffing, resources, or expertise to apply to receive and manage federal funding. Additionally, community-based organizations (CBOs) — the groups that are most connected to people facing problems that science could be activated to solve, such as health inequities and environmental injustices — face similar capacity barriers, especially around compliance with federal grants regulations and reporting obligations. Few research funds exist to facilitate the building and maintenance of strong relationships with CBOs and communities, or to provide capacity-building financing to ensure their full participation. Thus, relationships between communities and academia, companies, and the federal government often consume those communities’ time and resources without much return on their investment.

Great participatory science exists, if we know where to look

Place-based investments in regional innovation and research and development (R&D) unlocked by the CHIPS and Science Act (i.e. Economic Development Administration’s (EDA) Tech Hubs and National Science Foundation’s (NSF) Regional Innovation Engines and Convergence Accelerator) are starting to provide transformative opportunities to build local research capacity in an equitable manner. What they’ll need are the incentives, standards, requirements, and programmatic ideas to institutionalize equitable research partnerships.

Models of partnership have been established between community organizations, academic institutions, and/or the federal government focused on equitable relationships to generate evidence and innovations that advance community needs. 

An example of an academic-community partnership is the Healthy Flint Research Coordinating Center (HFRCC). The HFRCC evaluates and must approve all research conducted in Flint, Michigan. HFRCC designs proposed studies that would align better with community concerns and con­text and ensures that benefits flow directly back to the community. Health equity is assessed holistically: considering the economic, environmental, behavioral, and physical health of residents. Finally, all work done in Flint is made open access through this organization. From these efforts we learn that communities can play a vital role in defining problems to solve and ensuring the research will be done with equity in mind.

An example of a federal agency-community partnership is the Environmental Protection Agency’s (EPA) Participatory Science Initiative. Through citizen science processes, the EPA has enabled data collection of under-monitored areas to identify climate-related and environmental issues that require both technical and policy solutions. The EPA helps to facilitate these citizen-science initiatives through providing resources on the best air monitoring equipment and how to then visualize field data. These initiatives specifically empower low-income and minority communities who face greater environmental hazards, but often lack power and agency to vocalize concerns. 

Finally, communities themselves can be the generators of research projects, initially without a partner organization. In response to the lack of innovation in diabetic care management, Type 1 diabetic patients founded openAPS. This open source effort spurred the creation of an overnight, closed loop artificial pancreas system to reduce disease burden and save lives. Through decentralized deployment to over 2700 individuals, there are 63 million hours of real-world “closed-loop” data, with the results of prospective trials and randomized control trials (RCTs) showing fewer highs and less severe lows, i.e., greater quality of life. Thus, this innovation is now ripe for federal investment and partnership for it to reach a further critical scale.

Scaling participatory science requires infrastructure

Participatory science and innovation is still an emerging field. Yet, effective models for infrastructuring participation within scientific research enterprises have emerged over the past 20 years to build community engagement capacity of research institutions. Participatory research infrastructure (PRI) could take the form of the following: 

  1. Offices that develop tools for interfacing with communities, like citizen’s juries, online platforms, deliberative forums, and future-thinking workshops.
  2. Ongoing technology assessment projects to holistically evaluate innovation and research along dimensions of equity, trust, access, etc.
  3. Infrastructure (physical and digital) for research, design experimentation, and open innovation led by community members.
  4. Organized stakeholder networks for co-creation and community-driven citizen science
  5. Funding resources to build CBO capacity to meaningfully engage (examples including the RADx-UP program from the NIH and Civic Innovation Challenge from NSF).
  6. Governance structures with community members in decision-making roles and requirements that CBOs help to shape the direction of the research proposals.
  7. Peer-review committees staffed by members of the public, demonstrated recently by NSF’s Regional Innovation Engines
  8. Coalitions that utilize research as an input for collective action and making policy and governance decisions to advance communities’ goals.

Call to action

The responsibility of federally-funded scientific research is to serve the public good. And yet, because there are so few interventions that have been scaled, participatory science will remain a “nice to have” versus an imperative for the scientific enterprise. To bring participatory science into the mainstream, there will need to be creative policy solutions that create incentive mechanisms, standards, funding streams, training ecosystems, assessment mechanisms, and organizational capacity for participatory science. To meet this moment, we need a broader set of voices contributing ideas on this aspect of open science and countless others. That is why we recently launched an Open Science Policy Sprint, in partnership with the Center for Open Science and the Wilson Center. If you have ideas for federal actions that can help the U.S. meet and exceed its open science goals, we encourage you to submit your proposals here.